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Have you no shame? Why are you talking about this?

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The drawing above I call Transformation Heart Mandala and it dates from the week after mom died, in April 2012. The act of drawing soothed me, allowed me to move from sobbing, to a much needed quietude. I encourage any and everyone to explore mandala journaling as a daily practice or during times of stress or loss. Will devote a post to this in the future.

The drawing  below depicts one of my childhood memories from about the age of six or seven. Even though it is rendered in a cartoon format, because I consider it potentially disturbing, I am posting it at the very end and discourage those who think they may be bothered by viewing it to skip this post. I was my mother’s confidante during one of her paranoid hallucinations in which she imagined my 14 year old sister gravely injured. None of it actually happened, only in her troubled mind. I drew this on my birthday, as I reflected upon the milestones of my life. It was comforting to externalize the memory. Drawing out the trauma, having an image to show a witness, getting the memory out of one’s head and onto the paper, talking about it with my art therapist – it makes one feel less alone.

Some people may react with surprise, distaste or even disapproval and wonder why I am writing (and diagramming) in graphic detail about mom’s mental illness on such a public forum. Where is my sense of decency? (after all, I am not Paris Hilton) Have I no shame? (I have no plans to run for office.) Isn’t this embarrassing? ( well, yes, maybe just a little)  Don’t I have respect for my mother’s memory? (Yes, I actually feel honored to have had her as my mother)

As for the shame, well, yes, I had literally decades of shame, guilt and isolation. Now, at the nicely rounded age of fifty, after birthing three children, living through my child’s battle with cancer, and burying both of my parents, I truly know that the additional layer of suffering that comes along with having a family mental illness is not the illness itself but the ignorance surrounding the illness. As my father always said, education is vital.

I think we do ourselves and society a disservice when we “hush” up problems. Like any wound that needs fresh air and sunlight to heal, social issues like mental illness, domestic violence, abuse, addiction and the like, can only be addressed in an atmosphere of disclosure, transparency and positive intent. Shame, blame, guilt and secrecy hinder healing and promote stigma. I believe that the more we talk about these matters, we create greater opportunities for solutions to arise. And we eliminate the isolation that suffering can cause. Stop treating the mentally ill like modern day lepers.

When a child with cancer suffers, the family suffers, and this is often met with great sympathy, and an abundance of social resources. (As the mother of a survivor of childhood cancer, I know this from first hand experience.)

An adult woman with paranoid schizophrenia clearly suffers, the family suffers. Sympathy? Social resources? Not so much. ( As the daughter of a woman with schizophrenia, I also know this from first hand experience.)

As a child, I must have had inner resources and strength that kept me from going batshit crazy. And of course I had my dad, who was the epitome of even tempered, patient and gentle love. And then there was religion. The nuns’ academic and moral instructions, going to church, saying prayers, the comfort of the rosary. Books like A Wrinkle in Time, The Secret Garden, Little Women , The Yearling and the like. And finally my art, a lifelong faithful constant . I drew, painted, kept at diary, photographed, visited museums and was suckled by beauty.

Or maybe I was just lucky.

So yes, I let the shame go a while back. Had quite enough of that, thank you very much.  And now I am writing this. For myself. And for any other individual whose life has been touched by schizophrenia, depression, bipolar disorder, addiction and so on and so forth.

“ Don’t turn your eyes away from the bandaged place. That is where the light enters you.”  Rumi

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Oh and contrary to what I wrote above, there do exist some excellent resources for family members of individuals suffering from mental illness.

Two I heartily recommend are Intensive Family Support Services (IFSS) of the Mental Health Association of Essex County   and National Alliance for the Mentally Ill, an advocacy agency extraordinaire.  The free services of both agencies  include professional counseling, community education, family advocacy and compassionate support. If you have need, pick up the phone and call them. Coincidentally, this week is Mental Illness Awareness Week.

Thank you for reading and may you go gently and with love into the week.

All I have is this moment, and it sucks. But then there was that kiss…

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“Only two visitors allowed. One of you will have to stay here.”

That left me with little choice but to lead Dad down the drab hallway to the psychiatric unit, while Tim, my fiancé, remained behind in the waiting area. My throat tightened. This was hard. I was inclined to run screaming out into the parking lot and to keep on running. Let Dad and Tim deal with this.

Desperate, I called upon a perverted version of my usual yoga mantras: Just Breathe and Be Here, Now:  All I have is this moment, and this moment sucks. So Breathe.

It worked for me. As a child, my dad instructed me in the ways of self control.  The man who loses his temper, not only loses the argument, but he loses himself. Remember that. How could I forget?

I made it to the window and bleakly asked to be let into the locked unit with Dad. We sat at a long table in the day room waiting for Mom to come out for our visit.  She approached us tentatively and wrinkled the lower half of her face into a smile – a smile that eerily failed to reach her eyes.  I wondered what it felt like to be her. Here was a man sitting across the table from her whom she had accused of plotting against her only days earlier.  She sat down and looked at him.

“Well, I missed you, “ she said.

“ I missed you too. “ Dad’s voice was quiet.  “ I’ve cleaned the house and even made dinner.” He gave a soft laugh. “I thought you were coming home today.”

“Really?” Mom’s face brightened.

She turned to me. “How are the children, Renee?”

While we conversed about the kids, the nurses mercifully permitted Tim into the unit and he finally joined us at the table. Inwardly I relaxed. Mom adored Tim. Even when her delusions were in full force, Tim swore that he loved talking with my mom, even just sitting with her.

“She has a beautiful smile, “ he told me, “and she is always interacting with the other patients. She’s like the resident mother.”

“They all come and go.” Mom said of her fellow patients. “ I must say, everyone seems a little confused when they first arrive.”

I pictured in my mind one of those merry go rounds on a children’s playground, the kind that you hold onto and spin with your foot. You hold on tight and twirl round and round. When you finally jump off, you’ll always be dizzy, and it takes you a moment to regain your equilibrium. I kept imagining Mom and all the other patients jumping off one of these turnstiles and landing, with a soft thud and a shudder, not in the middle of a playground, but here, in the middle of the hospital unit. Looking up dazed, they were slowly orienting themselves back into a world where your loved ones really love you, and are not plotting conspiracies against you with the neighbors.

One of these women came over to the table and leaned in towards us. She wore a white plastic crucifix around her neck that perfectly matched the shade of her hair. Mom patted her on the arm.

“My two sisters came to visit.” The woman began.  “Um, let’s see, two? Yes, yes, I have two sisters. “

She babbled on a bit, making no sense. At one point I realized that she was carrying on two parallel conversations and one of them clearly did not include us.  Suddenly she looked at my mom and began to cry. Mom began to stroke the woman’s back and murmured, “Don’t cry, Irene, it will be all right.”

The woman was making no sense and I began to laugh. I am a terrible person. Terrible. I horrified myself, but it struck me that a mere gossamer curtain lay between this woman and me. Indeed, betweenthis woman and any of us Maybe my own babbling days are not that far off. I had to laugh, I just couldn’t help it.

“Why are you laughing? “ Irene looked point blank at me. Damn it, I thought.

“I think I’m just tired. “ I replied. “It’s been a long week.”
Tim looked at his watch.

“Seven thirty. Visiting hours are over. I guess we should go.”

We all rose to leave and Tim was the first to give Mom a hug and a kiss on the cheek.

“Come home soon, Grandma, we miss you.”
Then it was my turn.

“Look, Mom, I’m sorry I laughed, I just couldn’t help it. “ This time her eyes cleared and for a moment, she chuckled along with me. Then she sobered, and quietly said, “Say a prayer for me.”

Dad put his arms around Mom. They hugged. I looked back and saw him take her face with both his hands and kiss her. Quite deliberately and on the mouth. I had to look away. Forty-three years old and I couldn’t remember seeing them kiss like that. It was too sweet for me to watch.

“They’re kissing,” I whispered to Tim, incredulous.

Now outside the unit, we watched through the glass as Mom and Dad made their way across the room to the door. Every few steps they would stop and hug again. They would take a few steps, face one another, grasp hands and say those few things more that needed saying before parting company.

I was glad that the visit went well, and that Mom’s medical care seemed to be bringing her back to us, but the core of me felt raw and pissed as hell. Pissed at life. Why did the first damn doctor have to die?  Why did the next damn doctor change Mom’s medicine? Why did this have to happen now, after all these years? After all these years of thinking we were home free of her disease?  On the way home, Dad tried to talk to me about the kids, asked me how my health was. I said nothing. When he brought up President Bush I knew he was fishing for any kind of talk from me. He knew I was pissed at the President, too.  He needed to know I was okay. What I wanted and needed was for him to acknowledge what Mom’s illness had meant to me. What it had done to me as a child, how it had tied me up in a thick heavy rope and gagged me in so many ways. How revisiting that hell was the last thing I wanted to do. Even my body protests this demand for love she makes on me. My throat tightens, I gasp for air, I thirst, I hunger, I am depleted. I was not going to comfort him.  I had made it through the visit and my man was driving us home.  We dropped Dad off at his apartment. I said nothing.

As soon as we got home there was a message from Dad on the answering machine.

“I forgot to mention something. Call me back, please.”

Messages had become loaded with intrigue lately. What was it he forgot to mention? The way things had been going it could be anything. When I called him back, he sounded forlorn.

”I forgot to tell them something at the hospital. Your Mama and I – we’re old people. We need each other. Tell them that. You find a way to make them understand. I need her here at home, with me. You tell them. Do that for me, will you?”

“Okay, Dad, Don’t worry. She seems a lot better, I’m sure they’ll send her home soon. “
He was silent.

“Look, I’ll tell them, okay? “
”Thank you. Get some rest.” Not waiting for any response, he hung up.

Dad never said goodbye on the phone. He used the phone the way other people take bad photos of vacations. The way people cut off the top of a subject’s head, he cut off his own sentences by hanging up too soon or by being oddly abrupt. It annoyed me, but it identified him. He was from another world, a world where it takes weeks on a boat to get to America, where wife and children wait with restraint at the dinner table until the father lifts the first bite of his food to his lips, and certainly one without phones or computers – he was surrounded by a different atmosphere, always had been. He never realized the extent of Mom’s bloody revelations to me as a child. He didn’t ask or suspect; how could I have ever told him?

Mom’s condition dramatically improved once her medication reached that magic level to silence her delusions. When it finally happened, the change seemed to occur almost overnight and she was ready to come home at last. Before we knew it, she was in her armchair, chatting with the family, crocheting with contentment, picking out a book for the evening’s reading. Dad was positively giddy. His green-eyed girl had come home to him. The constancy and intensity of his love for her startled me. That they could cling to one another through six decades, that they could find their way back to each other once again in the face of mental illness humbles me.

There exists this one brilliant truth that overtakes the insanity and brings it to its knees: Dad loved Mom. William loved Dolores. Dolores loved Wei Lim.

Then the Doctor died…

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I wish I could say they lived happy ever after, but mom and dad experienced a bump in the road. A big one. Unbeknownst to me, the inevitable happened: mom’s psychiatrist died. I can’t really hold it against the guy, but I wish I could, since my parents never thought to seek a new psychiatrist. Mom precariously coasted along on refills of her past prescription.  Eventually, Dad found a new internist whom we all liked. He was from Dad’s native China and specialized in geriatrics.  Then they made one decision with dire consequences: they couldn’t bring themselves to share mom’s significant psychiatric history with the new doctor.  Maybe dad was secretly wishing for a new beginning. Maybe he was hoping for a chance to erase the past. I think he wanted to believe that mom was cured. She had been well for so long. Besides, the subject was painful, embarrassing, easy to avoid. 

“Let’s reduce this medication,” the new doc suggested, with good intentions. “It’s old. We don’t use it anymore.” Mom was only glad to comply.  Barely a month passed.

 “Renee, it’s your mother. Come and get me. I can’t stay in this apartment any longer; your father is trying to kill me. Hurry, please.” Several variations of that message greeted me on my voice mail when I arrived home one day from work.  

Hello! I thought to myself, There she is again. After 17 years of relative peace, during which Mom’s disease was managed well with medication, I was instantly brought face to face with the unstable nemesis of my childhood days. 

 

Sunday evening interlude: Everything I know about schizophrenia I learned from my Mother.

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Call me shameless, but I want to talk about mental illness. Having spent some decades of my life feeling the thump of its stigma, the weight of it, the obstacle, the stickiness, the shame, I just want to give it the finger. It’s an illness, get over it. It is not demon possession, it is not punishment for the sins of your fathers (though in cases of child abuse, it could be spawned from it) and you can’t get it from toilet seats or hugging. 

But it is a real issue, it causes suffering and those suffering from mental illness deserve compassion, understanding, healthcare and social support. On some level, if you have schizophrenia, you are screwed. Unless you happen to marry someone like my dad.  

Not long into their marriage, Dad must have realized that something was wrong. Maybe it started out as a display of nerves or anxiety when he had to be away at work. A hesitancy in her manner that wasn’t there before. Something subtle. Whatever it was eventually turned into full-blown fear and what was labeled, in those days, a ‘nervous breakdown.’  Mom suffered from twelve of these in twelve years. The hospitalizations periodically played out like somber background music to our sometimes normal and even happy family life. My elder sister and I were born in the midst of the mayhem, exactly seven years apart. She was a pretty, dark eyed version of Mom, while I took after my father, who was lean, brainy and myopic. When I got my first pair of cat eyed, pearlescent eyeglasses in the second grade, I looked at my reflection in the mirror and cried, feeling the ugly misfit. 

Seven was a tough age for me. I watched Goldie Hawn on Laugh-In, the Monkees after school, made my First Holy Communion, and all the while, Mom struggled with her illness. I was a silent witness to her sporadically odd, and at times, terrifying behavior. I never uttered these things aloud to anyone until much, much later. In conversation with friends, I regularly edited my childhood experiences of growing up with a mother who suffered from paranoid schizophrenia. Throughout my life, friends have told me I am calm. I soothe them. They can tell me anything and not feel judged. It was safe to bet that whatever they might have to say would be less startling than Mom telling me that Dad is killing people in the basement and drinking their blood.

During that particular year, just down the hallway from my room, with its pink fluffy shag rug, beloved site of my Barbie Doll playhouse, I stood behind my sister and watched while my mother attacked my father with a pair of scissors from her sewing basket. My father was of slighter build than Mom, and I remember him gripping her wrist as she held the scissors aloft, one of his feet behind the other, bracing himself against the plump, soft body that had turned against him. When I spoke to him of it recently, tears filled his eyes.

“She never attacked me, “ he insisted, with emotion, “she was ill.” 

At the time of the attack I was struck mute, becoming nothing but a huge pair of  eyes, taking it all in. As far as sounds, I can still hear the dull thud of my mother stepping heavily, straining against my father as we watched. More than three decades later, whenever I tried to speak of the event, my voice remained calm, my face expressionless, but inevitably my hands would begin to tremble and shake, my teeth chatter and my body involuntarily shiver. I looked at my hands as if they belonged to someone else; they were traitors to me, revealing the emotion that I would not permit myself to feel.

How many of Mom’s hallucinations was I privy to over the years? It’s hard to say. There was the one time when she dragged me by the wrist to my sister’s empty bedroom. The four-poster bed was neatly made with a dainty white chenille bedspread. My mother, clearly disturbed, her hair out of place, pointed at the bed and declared, “ See your sister? There she is, in a pool of her own blood.”  It must have been a form of shock that protected me.  I knew that what she said was false; I could see that for myself, but I had become her easiest and readiest confidante. To find my escape I would tell myself that I had descended from a royal line of Chinese princesses. I dreamt that my Chinese grandmother, whom I had never met, was watching over me from the ghostly realm of our ancestry. I had seen photos of my dad’s family: old sepia toned mysteries, with aunts, uncles and cousins dressed in rather imperial looking garments. Fine things. Embroidered in finery. My invisible, decidedly dead Chinese grandma, strong where my mother was weak, ever present when my Father was busy at the office, silently watched over me. She suited me just fine.       Image

I made it through elementary school and went on to middle school. One afternoon, I settled down for a snack and got ready to tackle my homework. There happened to be a little old lady walking across the street in front of our suburban home. Mom beckoned me to the window. “Don’t let anyone see you, “ she said, afraid. “See that woman? It’s really a man in disguise. The house is being watched.” Then twelve, I sat down with Mom on the couch and took her trembling hand in mine.

 “It’s okay, Mom, “ I cooed, “Don’t be afraid, it will be all right.”Image

Image one, Dolores Dage taken by William Dage
Image two, vintage portrait taken in Soo Chow China, my grandmother pictured on right with her little sister
Image three, Dolores Dage, taken by me, 1978 or thereabouts.